"You're not the only one dealing with issues!"

Welcome to the forum rxw1853. You are in a good place for support with your situation.

First, bless you for working so hard to care for your wife!
As many other full time caregivers here can attest to, it is an ABSOLUTELY consuming and exhausting job, physically, mentally and emotionally.

Second, I am so sorry you’ve had a friend speak to you this way. Perhaps, do to their own problems, they were just upset at the time and they didn’t mean to come across so harshly. Also, maybe they were not aware of how ill your wife is and thus, how consumed you are by it. Often times, people simply can’t imagine and don’t understand how consuming caregiving is unless they’ve been there; and even more so when it’s a loved one and/or you’re the primary caregiver. If it was a genuine stab at you personally, I say: shame on them!
Your wife is obviously (and rightly) your first and most priority in life. It sounds like you’re someone who perhaps your friends can and have relied on in the past. That’s wonderful and unfortunately, hard to find these days.
But, someone is only a true friend to you if they can be supportive or at least try to understand and cut you some slack when you are enduring such a hardship in your life.

If you feel this friend was just upset or not understanding, maybe try first explaining that you don’t want to hurt their feelings, but your wife needs you immensely right now and you just don’t have time for much outside of that. Maybe then tell them they are important to you and you would still like to enjoy time together. Ask them how you two might keep in touch in a more brief way. Leave the ball in their court.

Unfortunately sometimes when we’re in dire distress (as you are now) is when we find out who truly is our friend. I really hope they come around.

Food for thought:
“ A true friend shows love at all times And is a brother who is born for times of distress.”
(Proverbs 17:17)

Also, I really hope you can find some answers and help for your wife. Don’t forget to take care of yourself too, physically and mentally. You can only care for her if you are well.

Thank you so much, @1k194, for your thoughtful and very helpful comment! This is exactly the kind of support I was hoping for when I posted this topic. Thanks for understanding my distress and for your advice on next steps; I'm going to follow up with this friend as you suggest and we shall see how it goes!

Raw this is raw and I feel for you so much. You are only one person and how difficult to have this happen in your 60s.
It sounds like you manage your time in a way that works best to take care of your wife and yourself.
Your friends might be more open if it were cancer or open heart surgery, but I find sharing the stress of caregiving and dementia - in my case my husbands is still mild- is difficult to discuss. At first I did not know how to tell people. Then I had to or I would explode.
But I have two sisters. One has a husband who had a stroke years ago and she takes care of everything. The other’s husband needs a heart transplant. I have other friends whose husbands have cancer or heart surgery. What we go through is difficult to describe sometimes. As you said the diagnosis is vague. The issues complex.
If I call my sisters or friends I listen to them, but if I try to share they don’t relate or don’t want to hear.

It was so good to come here to share with others or read what others are going through and find support.

I hope you and your wife have a few close friends and family who you can reach out to and share what life is like for you and how difficult it is when others criticize how you are managing.

rxw1853- Good morning. I can't believe that anyone would have a reaction to you like that! My husband, David, was diagnosed with some form of dementia about a year or so ago. There were so many labels that he was given that I only knew that he was leaving me very quickly. I was his only caretaker and I had health issues that I put off taking care of.

Although I had friends who helped save me, I was exhausted when I had to put him in a hospice hospital because of behavioral changes that happened almost overnight or that I missed.

I didn't have time for the computer or friendly calls. I had one mission: to take care of David in the only way that I knew how: completely and with laser vision. I only left the house for health related appointments. I ordered food delivery. I should have looked for laundry pick up too.

But I will never regret doing what I did to my husband of 45 years.
David was 80 when he died, very peacefully. He knew I had done everything possible to help him.

I hardly answered the phone because I was so busy and too damn tired. My suggestions are to do what is needed and see if you can use your local stores for help. And, of course, any of your friends.

David was my top priority. I will always be grateful that I had the stamina to do what I did. He was my purpose.

Your wife is fortunate that she has you to care for her. Your friend has problems, but they shouldn't be yours now. You are doing a wonderful job; I bet your wife knows it!

Merry

I am so sorry for your wife's illness, but quite grateful to find many "kindred spirits" here. My husband was diagnosed with LBD early in 2018 at the age of 63. He is now in stage 6 of the seven stages....and....I....am....so sad and tired and overwhelmed at the responsibilities that keep popping up. Scott, one of the best contributors, wrote an excellent piece called "The Calvary is not Coming" and this post has given me clarity, strength, and the desire to finish this lonely journey with all that I have to give. (I hope someone will share his post again here, because I don't have the time to look for it...and it would be encouraging to you.)Friends mean well, but unless you have been in this position, they have no idea that it consumes your entire existence and pushes you beyond what you thought your limits would be.
As I was reading your post, I kept thinking that if the disease was mine instead of my husband's, he would be taking care of me just like you are doing for your wife. I know your wife is grateful for all that you are doing and, even though she can't express this very well, she is probably so sorry that this is the journey you both have to live. May God Bless you beyond all measure and may you finish strong and be able to look back and know you did all that could be done.
Jan

i would point out two things. first, we live in an era of people selfishly taking offence over the silliest, petty things. it's a shame to see this but it's real.

the second thing is that folks who have never dealt closely with alz/dementia patients have no real idea what it's like and how difficult it is. your friend really has no idea what you are going through. i was like that until my mother developed dementia in her late 70s. when my parents were 81 and 80 yrs old, my father went into the hospital and i stayed with my mother for 5 days. that's when i discovered how much i didn't know about the difficulties of caretaking for this disease. nobody who has never done it has no idea how hard it can be to explain a complex situation 50 times or more in one day. and the deal with my mother was that you had to explain it to her every time or risk her going into one of her rages. if she got angry, it was possible for her to, literally, stay in a rage for 2-3 weeks. hard to believe but it's true.

so after dealing with my mom, when my wife developed dementia, i at least had some idea of what i was doing. those of us who caretake for dementia learn skills and develop expertise that the rest of the human race never knows about.

@teacher502 here is the discussion you asked for!
https://connect.mayoclinic.org/discussion/the-cavalry-is-not-coming/

I find I feel better NOT talking about the details with friends and family, beyond “Unfortunately, Bill has vascular dementia, we’re staying pretty close to home, maybe you’d like to come over sometime.” With friends/family, I leave/respond to e-mails with short, no details re dementia care. With phone calls, I talk or return calls as I can fit in, and often say, “Oops, gotta go!”, if things start to go downhill at home.
People don’t want to hear the gory details (maybe they’re afraid of the diagnosis happening to them or someone they love). Reciting the details depresses me. It is what it is, it’s only going to get worse. Online support groups with dementia caregivers, virtual or one like this are your best bet. I pray a lot, helps to pour things out to the One who cares.
We’re here for you. “Friends” who would be unkind to you are not friends, that’s a difficult truth to hear. Family who are unkind are often self-absorbed and probably won’t change, so no need to worry about them. Practice self-care, you are doing a beyond difficult job.

Thank you! I have printed this and read it over and over ...it really helps to face each very new day and situation. Thanks to you again Becky...

OMG...it was Bill not Scott....please forgive me!